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DecodeME - UK ME/CFS DNA study underway

Discussion in 'BioMedical ME/CFS News' started by NelliePledge, Jun 23, 2020.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    You may be right.I think the problem may be the statistics. The number of gene variants is very high, so probabilities of links being real have to be adjusted down. The number of gene variant combinations is far higher and may make the problem intractable. That said, if you know that certain combinations are likely to be of interest you may be able to reduce the problem.
     
    andypants, MeSci, Kitty and 3 others like this.
  2. Barry

    Barry Senior Member (Voting Rights)

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    When this happens is the relevant illness frequency the same in both twins? Or is there the possibility of environmental factors, for those who live in significanly different circumstances.
     
    MeSci and Kitty like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I believe there is a general assumption that both types twin tend to share environmental factors to an equal extent. So environmental discordance will have an effect but if concordance is more common for monozygotic that must be genetic.

    I have to say that I think this is debatable. Monozygotic twins may be more likely to end up with closely matched environmental factors.
     
    Snow Leopard, FMMM1, Kitty and 3 others like this.
  4. Andy

    Andy Committee Member & Outreach

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    A quick note from me to say thank you to all of you who have shared this exciting news far and wide so far, the reception and reaction from the patient community surpassed what I'd hoped for and made all the hard work leading up to it worthwhile.
     
    janice, Esther12, chicaguapa and 49 others like this.
  5. Barry

    Barry Senior Member (Voting Rights)

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    Is there a way to see how many pwME have signed up so far?
     
  6. Andy

    Andy Committee Member & Outreach

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    Not publicly, but naturally we are monitoring it, and it's looking positive. :)
     
    rainy, Comet, Keela Too and 11 others like this.
  7. Sasha

    Sasha Senior Member (Voting Rights)

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    More stories in The Times today (which Andy is posting on other threads).

    Whenever a story allow comments, we should be posting the link to the DecodeME website and inviting patients and supporters to sign up. The same for every story about ME/CFS in the media from now on!

    Can anyone post on that Times article?
     
    Woolie, Rosie, Kitty and 5 others like this.
  8. Andy

    Andy Committee Member & Outreach

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    Shout out to the members of the CFS sub-reddit for supporting the study with two threads.

    Code:
    https://www.reddit.com/r/cfs/comments/he8dxg/uk_to_launch_worlds_largest_genetic_study_into/


    Code:
    https://www.reddit.com/r/cfs/comments/hea7cx/new_genetic_study_for_mecfs_everyone_can_sign_up/
     
    Woolie, Michiel Tack, Kitty and 11 others like this.
  9. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I shared it on fb and also sent a few texts yesterday to (Non ME) people :) One of the people is someone who lives away from London now but when I told her she said “Finally soon you can have an alternative to being gaslit by the NHS!”. I hope that’s true!
     
    janice, mango, Kitty and 12 others like this.
  10. strategist

    strategist Senior Member (Voting Rights)

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    Wessely: no tweets about DecodeME
    Sharpe: no tweets either
    Henrik Vogt: no tweets either

    Do they practice a biopsychosocial approach that pays attention to all important factors, or do they preach a biopsychosocial approach while practizing psychosomatic reductionism?

    Not sure who else of the BPS people is active on Twitter.
     
    janice, Woolie, Sarah94 and 22 others like this.
  11. Sean

    Sean Senior Member (Voting Rights)

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    Cowards.
     
    janice, Woolie, Kitty and 9 others like this.
  12. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Yes I noticed this too. For people who are apparently so dedicated to the welfare of and helping people with ME...they seem to be remarkably silent about the biggest ME research project ever to have happened...
     
    janice, Woolie, 2kidswithME and 17 others like this.
  13. Andy

    Andy Committee Member & Outreach

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    Catching up with some social media posts from yesterday.



     
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  14. Andy

    Andy Committee Member & Outreach

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    The CFS/ME Research account has somehow missed the big news as well. I'm sure once they spot it they'll be more than happy to promote the study.
     
    janice, Woolie, 2kidswithME and 17 others like this.
  15. Barry

    Barry Senior Member (Voting Rights)

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    "The new @decodeMEstudy is the world’s largest genetic study into ME/CFS."

    Given this UK-based ME/CFS study is going to be the largest scientific study of its kind in the world, you would think that makes it highly newsworthy in the UK scientific press, wouldn't you. I think the SMC should ponder that sometimes it is what you do not say that reveals to others most about your motives. I wonder how they would answer to genuine scientists why they have made no mention of this. I think it is good, because it is incredibly revealing.
     
  16. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Glad this is finally off the ground!

    A quick question, will participants be able to access a set of their own genome data? This (at least in my opinion) would provide a strong incentive to be a part of the study.
     
    Last edited: Jun 24, 2020
  17. Trish

    Trish Moderator Staff Member

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    SMC may not have been aware of it until yesterday. I think they usually make a big fuss about ME stuff when the BPS researchers ask them to.
     
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  18. Andy

    Andy Committee Member & Outreach

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    After feedback, the following text has been added to the website, directly above the sign-up form.
     
  19. NelliePledge

    NelliePledge Moderator Staff Member

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    @Andy Sonya C has tweeted on her personal twitter yesterday that 3300 signed up in the first 12 hours sorry no oomph to search for it. I think I saw it retweeted by @Simon M but possibly it was someone else
     
  20. obeat

    obeat Senior Member (Voting Rights)

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    Response about DecodeME from leading GP in N Ireland
    "I really welcome this research to unpack this complex condition which impacts so many lives and which leaves those affected and those who endeavour to care for them without answers."
     

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